Chronic Inflammatory Demyelinating polyneurpathy - anyone ?

Discussion in 'General Health & Wellness' started by Careygirl, Dec 21, 2004.

  1. Careygirl

    Careygirl New Member

    I would be interested in hearing from anyone with this diesease - closely related to Gullian Barre. What have your experiences been, what medications have you taken, how are you doing? My ex-husband has been recently diagnosed, and seems to be failing the treatments they have tried.
  2. deejaymaz

    deejaymaz New Member

    have been doing lots of research these past few days---diagnosis was confirmed with an EMG---test from hell-----seems that the most widely used treatment is IV immunoglobulin-------mega $$$$$$$--but sucess rate has proven to help a lot of folks with this dx-----

    since I cannot currently afford the IV treatment--doc has increased my Neurotin (++ 600 mgs per day) and Klonopin PRN----

    fibromyalgia, CFS, and MPS for many years--

    CIDP is a RARE disease--and the symptoms are pretty much the same as GBS--but not nearly as drastic (thank God)--

    there is info on the net, but it takes a whole lot of sorting to get to it-----and ususally dont get good results with google or other search engines-----need to start with medical sites--like Mayo Clinic and go from there----many links to follow, but info is there if you have the patience to sort through everything-----check neurology sites as well---

    not sure of what you are looking for---and what your husbands symptoms are--ane the extent of the damage from the CIDP----

    really baffling----------and much more serious than peripheral neuropathy------prior to my EMG dx--the problems I had were tingling, burning, and numbness in feet and some problems with hands, weakness in the legs, and arms above wrist and up to elbow--hands I attributed to arthritis---now told the its CIDP---bigggest concern of doc was that I did not have the strength to knee-bend and then stand without grabbing on to something----(figured that was just part of aging)---------------there is also a similarity and relationship to ALSanad myasthenia gravis------so that has to be eliminated too.

    what treatments has your husband had, and what were the side effects, and results-----

    I'm stumbling here---but doing the best I can to educate myself-----so glad to have seen your post-----

    hope to hear from you soon---and will be praying for both of you as well-----------dee